Guest Post: Longtime Patient, New Advocate

I am very pleased to share this guest post from Darlene Prestwich in which she shares her experiences as a new(ish) advocate. I’ve been doing this so long, sometimes I forget what it was like to jump in the deep end of the advocacy pool. Darlene describes her own experiences with grace, and I am so grateful she is sharing them here today.


This week I’m home alone. My family is on an annual week-long camping trip to a neighboring state. Its incredibly painful sending them off to do things that I absolutely love to do year after year, but I don’t want ME/CFS to take those experiences away from them, too. So they stock the fridge before they leave and go adventuring without me. Last year I found it incredibly difficult to send them off. I was homebound and dealing with a particularly nasty and long-lived crash that looked as if it may be my new baseline. I had to spend much of the day in bed, being capable of self care but not much more. I was lonely, sad, and so very sick.

I could have reached out to friends, extended family, or supportive church groups, but I simply didn’t have enough energy for social interaction. That’s just one of the cruel tricks this disease plays. I decided to venture online and began to get a greater sense of the depth of the ME/CFS community there. Perhaps it was because I needed it so much right then (I’d dabbled around a bit before), but I was hooked. These people were speaking my language! Plus, I could rest mid-sentence if I needed to. Here were formerly active, capable, and successful people whose bodies and brains were so whacked out that simple physical or cognitive tasks could be overwhelming, and even lead to relapse. Many had been able to find a sense of acceptance despite the desolation of this disease and the toll it takes. Some were desperate and didn’t know if they could go on another day; they felt misunderstood, mistreated, and so very broken. It was both heartrending and encouraging and most of all, familiar.

At times going online was simply overwhelming. The combination of new terminology and technology I wasn’t very familiar with was daunting to say the least. It’s incredibly taxing to learn new things when your brain is a foggy mess. But the online advocacy community was so intriguing. Here was a group of people who were trying to rise up, be heard, and effect change. Most were doing it primarily from their beds. A few months into my forays online, HHS contracted with IOM to create a new case definition for ME/CFS. Suddenly I was signing petitions, writing letters, and urging family and friends to do the same. And all at once I went from being pleased that there was a group of people online who were speaking my language, to wondering just what language these people were speaking.

Things seemed to be in code. I’ve never been much for acronyms, and now I was swimming in them. Even Google was stumped at times. Adding to the confusion was how often simply rearranging the same letters meant something completely different: i.e. IOM,OMI, & IMO (or its perhaps more gracious variation, IMHO). Many a browsing session turned into an IAMGOTOBED experience. (Internet Acronym Mess Got Overwhelming, Tired Out Brain Ends Day)

Without advocates who were willing to educate me I would have been completely lost. There are many patient, inclusive, and kind people in this community. It takes work to bring someone up to speed, and it’s a steep learning curve for an absolute beginner. I am very appreciative of those who were—and continue to be—willing to use precious energy to answer my sometimes incredibly basic questions. The more I learn about the history of ME/CFS, the more my admiration grows for those who have been advocating tirelessly for years. (Well, maybe not tirelessly, but in spite of being profoundly tired.) There are also many who have worn themselves out trying to be heard.

These were people with strong opinions who felt passionate about their cause, but who didn’t always agree. The IOM contract was hugely divisive, and it was disconcerting to see how viciously some advocates attacked other advocates. It seemed so counterproductive, especially within a movement which faces the unique challenges this one does. It has been said that advocacy is a messy business and those who want to contribute should put on their “big girl pants” and grow a thicker skin. I’m sure that can be helpful advice, but it seems doubly challenging for people who are often so ill they rarely even put on pants. On the other hand, I’ve watched advocates who were sharply divided quickly leap to other’s defense when attacks came from without the community. I got the sense that this community feels sort of like a family.

I was enjoying this business of being an advocate. I was getting a better grasp of the technology, and with repeated use the terminology wasn’t so intimidating either. Then I ran across an opinion that gave me pause. Someone had posted that there were too many people claiming the title of advocate. They suggested that signing petitions and writing letters Does Not an Advocate Make. Well, I’m not a lobbyist or a lawyer, and I haven’t started a patient organization. I don’t run a support group or make films. I don’t even have a blog. So… maybe I’m just some sort of a wannabe advocate. I suppose the answer lies in how one defines ‘advocate’. I do know that I am advocating. And at times it comes at a substantial personal cost; it doesn’t take much to do that, unfortunately. But it feels good to be doing something; and for now I suppose that will have to be enough.

Through all this I’ve become more open about my illness with my friends and extended family. I’ve appealed to government representatives and become more willing to attempt to educate my various healthcare providers. After all, it takes courage simply to admit I have an illness as lame as Chronic Fatigue Syndrome sounds. And although Myalgic Encephalomyelitis now trips easily off my tongue, even my closest family has yet to master that mouthful consistently. I also feel a much greater responsibility to fight for others who are suffering, as well as those who will be stricken down by this devastating disease.

So this week will be quiet, and a bit lonely. But I’m pleased that I have new friends and acquaintances that I didn’t have last year. Many are, without a doubt, Completely Legitimate Advocates. I still have so much to learn, and not nearly enough capacity to do everything I would like. But I’ve come to believe that my voice is important. After all, imo we need every voice we can get.

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12 Responses to Guest Post: Longtime Patient, New Advocate

  1. Robert Morley says:

    To my mind, if you’ve educated a single healthcare provider, even just to indicate to them that there IS a controversy or that it may not be the simple symptom list they learned, you’ve advocated for ME/CFS. Perhaps not as much as others, but you’ve advocated. If you’ve gone further and truly educated them as to what the illness is about and perhaps changed their mind, so much the better.

    On a side note, I laughed hard at your IAMGOTOBED acronym. That was hilarious!

  2. Claudia Goodell says:

    OUTSTANDING! Thanks for sharing Darlene 🙂

  3. Strongly agree with Robert Morley’s comment above and would go still further: if you’ve educated anyone, friend, family, stranger; if you’ve supported another person with #MEcfs; or if you’ve honestly shared your experience, you are making a contribution, you are making a change, you are advocating a better future for us all.

    #MEcfs patients suffer through isolation and sometimes I think we almost carry the condition too well. I think there is huge progress to be made by turning ourselves inside out and showing the world all that we are, all that we have achieved and perhaps most importantly of all: starting the process of finding each other again.

    Great post.

  4. Ess says:

    The HHS IOM contract in the U.S. has brought out MANY voices speaking up / speaking out / advocating. This is a good thing — all those voices, that is. All those actions!!

    Out of interest–here is the dictionary definition of an advocate.

    a person who speaks or writes in support or defense of a person, cause, etc. (usually followed by of ): an advocate of peace.

    Advocating for justice for pwME/CFS comes at a most pivotal time with the IOM contract. The more voices speaking and advocating–the better–as ME/CFS continues to spread–making us very SICK; stealing all aspects of our lives away from us and from our families–and after 30 years there is NO meaningful treatment.

    AND, yet, irresponsibly, irrationally and with willful negligence and harm to pwME/CFS, HHS wants to seal a deal with a predetermined outcome of a redefinition of ME/CFS; HHS’ actions with the IOM and P2P — intent on locking in pwME/CFS for eternity with NO meaningful treatment; attempting to further block biological research–stick to and condemn us with GET and CBT–HARMFUL treatments and not for the biological disease of ME/CFS.

    On a lighter note, I hope you find some bright spots and sunshine in this week — it sounds like you will find that.

  5. Kathryn says:

    Bless your heart! Of course you are an advocate! Raising awareness to others is an important part of advocacy, no matter who they are.

    Thank you so much for your efforts, your willingness to learn, and your guest blog here; I enjoyed it immensely.

    Remember (as they say with trying new meds), start low and go slow. Take good care of yourself first.

  6. Sasha says:

    Great post, Darlene!

    I don’t know what an advocate is either or what you have to do to be counted as one. Maybe some people might define it as someone who creates advocacy actions that others follow, but I don’t think it really matters. I think that what matters is that we all join in.

    And I think that most “advocates” will have started off as “followers”. It’s a process, and you’ve described the early part of the process very well. Not everyone will go on to lead, and not everyone needs to.

  7. kathy d. says:

    OMGYAAA: Translation: Oh my gosh, you are an advocate, and one who can write and has a sense of humor, a very important trait for ME/CFS sufferers. And don’t let anyone tell you that you aren’t or that you have to fit a, b, or c qualifications to be one.

    If you write letters or emails or educate health care providers or politicians or do anything that’s pro-active — and what encompasses a lot of activities — you are an advocate. If you sit in bed and write emails, you are an advocate, etc.

    Welcome to the world of advocacy, a frustrating one at this point, given what HHS and NIH and their related committees, are doing. It’s exasperating, but if we all don’t do it, who will?

    We have some excellent allies who write articles or speak out or write on blogs. We need more but there are great people in this community of those associated with ME/CFS in one way or another, and every type of help is positive and will educate someone. Now if we could only get the government to agree.

  8. Jane L. says:

    Great, honest post. I think many patients can relate.

  9. Ren says:

    MHOTY (my hat’s off to you : )

  10. Maureen MacQuarrie says:

    Thanks Darlene. Advocates of all stages can relate to what you have so eloquently stated. As Ren says ‘Hats off to you’ — for putting into words what so many of us feel.

    And hats off to you Jennie for all the guest posts that have graced your site. Great to hear from you and great to hear different voices too.

  11. Carol Ann says:

    Thank you Darlene. I am exactly where you are right now. I have had to give up practically my whole life..for a long time. However, I cannot afford to stay in that mode for long. I have a gratitude list, written down, that I repeat every day. It works for me. For now. Staying on top of the positive is crucial for this woman. My dream one day, is to be an advocate for M.E./CFS patients to accompany them to Drs. appts. so they do NOT have to be degraded. A mental health professional tagging along, I found, is great deterrent for that. Anyway, that is my dream, a volunteer program affiliated with Mental Health.

    I only go to Dr.s who are sensitive to my needs. It is excruciating the time involved to do this but worthwhile.

    Thank You so much for sharing your story, you inspire me!

    Jennie Spotila: Going take this time also to thank you for your dedication and hard work. I cannot imagine what my body would do hearing that negativity at the meetings.

    And this is my public declaration: If I ever see Dr. Montoya, he is getting a hug and a cheek kiss, whether he suspects it or not!! lol

  12. Carol Ann says:

    P.S. Love the acronym IAMGOTOBED lolol

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